Sunday, March 20, 2011

A reporter for the New York Times recently made this statement (see video below):

"I think the Japanese tend to try to maintain a veneer of calm and not breech topics that might be alarming or insulting (emphasis added). For example, until recently, it was the norm for families not to tell a family member who had cancer (about the cancer) just to save suffering on the part of the family member and we see some of that mentality at play in some of the communications we have seen from Japanese officials who have refused to confirm what turns out now to be a very serious situation at the Fukushima Daiichi plant. They were very slow in acknowledging some of the dangers."

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The earthquake, tsunami, and nuclear plant crisis in Japan have inflicted unspeakable loss and suffering onto the Japanese people. It goes without saying that there are differences between a government communicating risk of nuclear disaster and a physician or family communicating cancer diagnosis/prognosis with a patient. The comparison is interesting though, as commonalities exist including asymmetric information, fear, uncertainty, and the specter of unpredictable complications.

This comparison started me thinking about cultural differences in communication regarding prognosis and prompted a brief search for research regarding preferences for disclosure of diagnosis and prognosis in a Japanese population. In reviewing palliative medicine journals regularly, there is a significant amount of HPM research from Japan, so it was no surprise that I found some work on this question.

For example, a survey published (Open Access PDF) in the Journal of Medical Ethics in 2005 asked members of the general population in Tokyo about their preference for information about diagnosis and prognosis in the event of a cancer diagnosis. Almost all respondents wished for partial or full disclosure of both diagnosis and prognosis. With respect to prognosis, about a third wished for full, immediate disclosure regarding the prospect for complete recovery and expected length of survival. Most of the remainder of respondents wished for either gradual, full disclosure or partial disclosure. The authors note that the results are similar to findings in American and British studies.

One's preference for disclosure is not the only factor that goes into determining if the information is actually disclosed. In my practice, I will sometimes encounter a family member who requests that prognostic information be withheld from the patient. While it is paramount to identify and address the concerns which underlie this request, Americans generally understand the elevated and protected status of the principle of autonomy in our society. Most people seem to understand the physician's desire to assess the patient's information needs in this context. How does this work in a society where autonomy isn't quite as prominent?

This question is addressed in a separate paper from the same Japanese study in Tokyo. (Open Access PDF) The methodology could have been a little cleaner (and described more clearly). It appears that subjects who wished for full, immediate disclosure would be less likely to allow their physicians or family to go against that wish (i.e. withhold information about dx/px) than those who wanted less than full disclosure or no disclosure. However, a significant minority of subjects who wished for disclosure thought it was appropriate for either family or the physician to be given authority to withhold diagnosis or prognosis.

So there is heterogeneity in terms of disclosure preferences as well as the desired role that family and physicians play in the decision to disclose. Cultural differences aside, I think we see significant heterogeneity in the U.S., too- e.g. patients who want us to tell them their prognosis privately vs. those who tell us to talk down the hall with their loved ones because they don't want to hear it, etc. I would be curious how many autonomy-obsessed people in the U.S. who want full disclosure immediately would give their loved ones and/or physicians discretion in disclosure. (Not aware of any research looking at this.)

This brings us to the main barriers to disclosure in any setting: fear of harming the patient and avoidance of difficult communication tasks. Does greater emphasis on the collective in Japan make it easier for physicians and families to ignore the results of the above studies, citing the harm, indeed insult that may come through disclosure? Recent American research (e.g. Coping with Cancer) suggests that end of life discussions may even be salutary for dying patients and their families from a psychological standpoint. How might this apply in Japan or other cultures? At least one study seems to suggest that psychological morbidity appeared slightly lower in patients with malignant head and neck cancer who were "informed about their condition" vs. those that were not informed (unclear what exactly "being informed" entailed).

In the discussion section of this study, they mention that it is the norm for physicians to ask the patient's family about disclosure of cancer, even if the patient has early stage cancer. This study was published in 1999, and it sounds like things might have changed some in the last decade based on the articles above as well as what the NYT reporter says.

Bottom line: The key in any setting is undertaking a skilled process of determining how the information is to be handled, accounting for individual preferences as well as family processes which are both influenced by culture. For American providers caring for native Japanese patients, one might anticipate that a family would expect you to talk to them about how to handle information and may request that disclosure to the patient be withheld. If approached by a family with this request, I think it's important once again to make sure you fully understand their concerns and explain that you will respect the family's wish if the patient tells you they want to defer to family.

As far as a nuclear disaster goes, if I'm ever in one (let's hope not) give me information that either calms my fears or information that is actionable. (ABC World News did a great job of sending mixed messages on Friday, verbally telling the U.S. audience....appropriately.... that "we're ok" but displaying an ominous red background throughout the show as well as a map that showed a plume of minuscule but detectable radiation that had traversed the Pacific.)

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